I'm Bruised Not Broken

tag:blogger.com,1999:blog-11351179243064698832012-02-16T08:31:28.535-05:00I'm Bruised Not BrokenEvan is the youngest member of our family and was diagnosed with Hemophilia A when he was two days old. We have no family history of this disease and are learning about it every day. Welcome to our journey.sarasarasarahttp://www.blogger.com/profile/01522988547372855597noreply@blogger.comBlogger271100tag:blogger.com,1999:blog-1135117924306469883.post-47649271188190944132010-04-11T21:46:00.004-04:002010-04-11T22:08:26.136-04:00i used to be scared of this disease.

its true. when evan was diagnosed with hemophilia, i really fell apart inside. my emotions took over and i cried what felt like nonstop for days. i was confused and terrified of the unknown. the only thing i had ever heard about hemophilia was when i was a kid and watching the made for tv movie about ryan white. yep, that ryan white...the young boy who died of aids. my stomach turned. my

sarasarasarahttp://www.blogger.com/profile/01522988547372855597noreply@blogger.com39tag:blogger.com,1999:blog-1135117924306469883.post-89689012568716383492010-02-28T22:10:00.002-05:002010-02-28T22:22:17.051-05:00i've cancelled my hiatus.

okay, so i wasn't gone on purpose...i think i just got super lazy? ok, maybe i didn't do that either. you see, my original purpose for starting this blog was to document what we were going through with e's disease and share with others how we handle things and where my head, as a mother through all of this insanity, is at. thankfully, we have had a pretty easy go of things this past year and

sarasarasarahttp://www.blogger.com/profile/01522988547372855597noreply@blogger.com7tag:blogger.com,1999:blog-1135117924306469883.post-44589856700405972952009-08-30T16:00:00.012-04:002009-08-30T16:27:30.037-04:00the calm before the storm?

i realise this is pre-emptive worry, but i wouldn't really be me if i weren't worrying for nothing about something. so, cold and flu season is almost here. it's a real bitch by itself, but throw in a kid with a port and it becomes a raging one. so i find myself trying to enjoy the days of playing outside and sending him to the gym daycare with the other children before i find myself wrapping us

sarasarasarahttp://www.blogger.com/profile/01522988547372855597noreply@blogger.com4tag:blogger.com,1999:blog-1135117924306469883.post-85547307450974223252009-05-25T13:31:00.003-04:002009-05-25T13:47:06.520-04:00sometimes i forget i am here.

well, i mean...i forget that i have this place. i don't know if thats a good or bad thing. on the good side, it means that things with e have been good. nothing really to report other than we are still doing prophy three days a week. it still feels emotionally taxing at times. sticking your kid with a needle has come to be the easy part. its the mixing and the thoughts that swirl around in

sarasarasarahttp://www.blogger.com/profile/01522988547372855597noreply@blogger.com4tag:blogger.com,1999:blog-1135117924306469883.post-56099051232671147222009-04-19T20:27:00.004-04:002009-04-19T21:10:34.208-04:00hey! help a hemo out =)

so, our spring walk for bleeding disorders is coming up at the end of next month. my goal this year is $3000. i know it sounds like a lot, and its such a strange time to be giving any money away, but the hemophilia foundation does such great things for families and research and any amount that you can give to help out would mean the world. so, if you want to donate you can here. i promise

sarasarasarahttp://www.blogger.com/profile/01522988547372855597noreply@blogger.com0tag:blogger.com,1999:blog-1135117924306469883.post-66697877283104826352009-04-10T21:32:00.003-04:002009-04-10T21:53:28.130-04:00our son, the medical anamoly.

so we got e's blood results back from his lab draw this week. first, his factor level was above 1% after 72 hours which i am told is what they want to see. so, yay. the two tests he got (the lupus anticoagulant and the mono test) were hopefully going to solve the mystery of the decreasing factor level. but...its not to be. both tests came back negative.so. back to the drawing

sarasarasarahttp://www.blogger.com/profile/01522988547372855597noreply@blogger.com2tag:blogger.com,1999:blog-1135117924306469883.post-85196388357530401742009-04-05T20:56:00.002-04:002009-04-05T21:09:36.947-04:00i've never been a fan of speculation

and i have come to find that so much of medicine is just that. speculation. and waiting. one of the doctor's in e's hemotology practice brought it to our attention that if his levels have been decreasing that there has to be something going on...even if he has consistently tested negative for inhibitors. so i took him for some bloodwork a couple of weeks ago where we drew blood for a mixing

sarasarasarahttp://www.blogger.com/profile/01522988547372855597noreply@blogger.com3tag:blogger.com,1999:blog-1135117924306469883.post-63908453833778570572009-03-06T21:26:00.003-05:002009-03-06T21:42:12.394-05:00I did it!

well, i did it. i accessed e's port today. the nurse was here and asked if i still wanted to do it...i sort of hesitated and she said "yep, you can do it." so i got everything ready, and i didn't even screw up putting on my sterile gloves and keeping them sterile. and then i accessed him. it was such an amazing thing. i was scared and nervous that i was going to mess up something, or hurt

sarasarasarahttp://www.blogger.com/profile/01522988547372855597noreply@blogger.com7tag:blogger.com,1999:blog-1135117924306469883.post-20543866095290128282009-02-19T15:05:00.003-05:002009-02-19T15:09:24.703-05:00entry has been made.

well, e got his first infusion yesterday. i have got to say that emla cream is nothing short of amazing. we have had some toruble with the nurse that was supposed to come out here, so i took him to st. joe's until we can find someone that is on board with the way we choose to access his port. when it was time to lay him on the table he got really nervous...he knows that usually means a lot of

sarasarasarahttp://www.blogger.com/profile/01522988547372855597noreply@blogger.com2tag:blogger.com,1999:blog-1135117924306469883.post-79186407174061763592009-02-07T08:30:00.005-05:002009-02-07T08:59:41.205-05:00port surgery went really well!

i was pretty nervous before e's surgery. i think it was the thought of my child having to be put out. and the fact that he was being cut open. and he just happens to have this disorder that keeps him from clotting well. so, yeah...cutting him open was frightening. however small the cut was, it was still cutting him open to me and that was unsettling, to say the least.i got evan to the

sarasarasarahttp://www.blogger.com/profile/01522988547372855597noreply@blogger.com10tag:blogger.com,1999:blog-1135117924306469883.post-56530994398078098752009-01-21T21:10:00.006-05:002009-01-22T08:33:34.147-05:00well, we're going to put in a port.

i have been waiting to get lab results back before i posted. we have been doing normal level checks and at the last one (after the picc line was pulled) we found that e's level was at 0.6%. when all of this started when he was two days old, he started out at 6%. he was 5.9% a few months later, and then down to 3% at around 1 year old. right before the head bleed he had labs done and he was at

sarasarasarahttp://www.blogger.com/profile/01522988547372855597noreply@blogger.com2tag:blogger.com,1999:blog-1135117924306469883.post-71383680951879570292009-01-19T14:43:00.001-05:002009-01-19T14:45:10.616-05:00so tell me about ports.

it looks like we may be going that route, and i'm curious about how long it took you to learn how to access it. also about the types of tricks you use to keep your little one preoccupied and what the actual surgery is like.i am completely speculating at this point, as we are still awaiting some lab results, but i am a big fat planner and would like to know the dirt.

sarasarasarahttp://www.blogger.com/profile/01522988547372855597noreply@blogger.com1tag:blogger.com,1999:blog-1135117924306469883.post-55283202064864259902009-01-05T21:15:00.004-05:002009-01-08T22:23:10.862-05:00for other hemo parents (well, non-hemo ones too)

i just ordered some really cool padding for the bathtub for e to keep him from hurting himself if (well, when really) he hits his head on the tub. i thought i would share the link in case anyone else is interested.i also bought an inflatable spout cover from babies-r-us. it was a lot softer than the other spout covers. they offered plastic ones that seemed too hard for his head if he were to

sarasarasarahttp://www.blogger.com/profile/01522988547372855597noreply@blogger.com7tag:blogger.com,1999:blog-1135117924306469883.post-52083335670414180112008-12-26T20:22:00.004-05:002009-01-08T22:23:37.247-05:00what a long, strange trip it's been

yeah, no...this is not a post about the greatful dead. in fact, i'm not even a dead fan but i was looking through some cd's yesterday and i guess my husband has a couple of copies of that album and the title just seemed to fit the way i have been feeling the past week.so, since my last post we have been discharged from the hospital. it was found on sunday that evan did not have an infection in

sarasarasarahttp://www.blogger.com/profile/01522988547372855597noreply@blogger.com2tag:blogger.com,1999:blog-1135117924306469883.post-89190639344627846782008-12-21T20:14:00.003-05:002009-01-08T22:23:57.442-05:00oh, what a long weekend.

you know, the funny thing about this disease is just when i think we're out of the woods with something bad, something else happens.on friday afternoon evan had a fever of 101.4. usually i'd just give him some tylenol and let it do its thing, but since he has the picc line any temperature over 100.5 means he needs a blood culture done in order to rule out infection. so i called sara (our

sarasarasarahttp://www.blogger.com/profile/01522988547372855597noreply@blogger.com4tag:blogger.com,1999:blog-1135117924306469883.post-23689351028806160992008-12-13T21:54:00.003-05:002009-01-08T22:24:22.917-05:00we're down to two!

well, i took e to the hemotologist on thursday morning for a factor level draw before i infused him. it was actually pretty cool, the nurse had me flush his picc line and draw his blood. never in my wildest dreams did i ever think this would be something i would do (or be sort of excited about) but it was sort of empowering. it's strange that these sort of milestones make me feel like i am

sarasarasarahttp://www.blogger.com/profile/01522988547372855597noreply@blogger.com1tag:blogger.com,1999:blog-1135117924306469883.post-29134942275029814442008-12-06T10:03:00.005-05:002009-01-08T22:24:44.799-05:00pictures

here are some pictures of evan after he had his eeg. they had to put glue all over his head to stick the little things to. i wanted to get a shot while he was all gussied up, but i sort of forgot. plus i was thinking the flash could mess up his test. so i didnt take any.here are a couple of pictures of evan and i in the picu. this is after i had about three hours of sleep in a hospital chair

sarasarasarahttp://www.blogger.com/profile/01522988547372855597noreply@blogger.com4tag:blogger.com,1999:blog-1135117924306469883.post-63122001305049020612008-11-30T20:24:00.003-05:002008-11-30T20:58:51.605-05:00

man, what an insane last few days we have had. on tuesday morning, evan woke up cranky and not himself. noah noticed his facial twitching had come back (which had happened a couple of times the week before, but i thought was just a normal twitch) and i could tell that he wasn't quite right. i put him in his highchair and he couldn't lift his milk and wouldn't eat. i took him to the hospital,

sarasarasarahttp://www.blogger.com/profile/01522988547372855597noreply@blogger.com2tag:blogger.com,1999:blog-1135117924306469883.post-25269618821728835392008-11-24T20:57:00.005-05:002008-11-24T21:15:04.209-05:00frustrated.

this is definitely an emotion that i feel a lot dealing with this disease. i feel like i am making real progress in understanding and coping with it all, and then.....nope.evan had his blood tests done last week. i called sara (the hemo nurse) yesterday to check on his results and she said that his factor level came back all wonky at 0.6% so the lab tech was going to run another level and that

sarasarasarahttp://www.blogger.com/profile/01522988547372855597noreply@blogger.com1tag:blogger.com,1999:blog-1135117924306469883.post-46303452019513705202008-11-18T21:08:00.003-05:002008-11-23T20:54:56.161-05:00ugh...hemophilia anxiety.

so i spoke with the head nurse at the hemotology clinic yesterday and she said she'd like the have E come in for a check-up. i didn't think it was that big of a deal until i spoke to her today. apparently he needs to have blood drawn for a factor level and an inhibitor check. and then she rattled off some other tests the hemotologist may want to order, but i don't really know what they're

sarasarasarahttp://www.blogger.com/profile/01522988547372855597noreply@blogger.com2tag:blogger.com,1999:blog-1135117924306469883.post-7212356565710296362008-11-11T21:31:00.003-05:002009-01-08T22:25:33.213-05:00as promised...

e's new helmet came in on monday. it is fantastic. better than i could have ever imagined. its soft and cozy and he has hardly tried to take it off. i know its sort of silly to get so excited over a helmet (that my husband still can't come to terms with him having to wear) but i find that with this disease, in order for me to truly accept and embrace it, that i need to get excited about the

sarasarasarahttp://www.blogger.com/profile/01522988547372855597noreply@blogger.com1tag:blogger.com,1999:blog-1135117924306469883.post-62808533268170884652008-10-30T22:10:00.004-04:002009-01-08T22:25:11.267-05:00if you're looking for a good cause to contribute to

i strongly recommend donating to your local hemophilia foundation. i was speaking to someone there that i speak with quite often about how to use the best verbage to speak to my insurance company to get them to cover a new helmet for E, and she told me that the hemophilia foundation will buy it for us. i was so excited. i'm still so excited about it. these helmets are expensive, and at the

sarasarasarahttp://www.blogger.com/profile/01522988547372855597noreply@blogger.com1tag:blogger.com,1999:blog-1135117924306469883.post-69086570511016048132008-10-19T22:06:00.016-04:002008-10-19T23:07:32.062-04:00not for the squeamish.

so i finally uploaded some photos today and realised that the pitctures that i took from the hospital visit that prompted me to start this blog have yet to be shared. they tell the story of what e goes through at the er better than i ever could. except that i forgot to bring the camera in with me for the ct scan and didn't want to look like a total ass and leave to go and get it. i guess those

sarasarasarahttp://www.blogger.com/profile/01522988547372855597noreply@blogger.com2tag:blogger.com,1999:blog-1135117924306469883.post-58793511893407416652008-10-07T21:58:00.003-04:002008-10-07T22:04:56.462-04:00oh, the irony.

well, today was e's 15 month check-up. weeeeeeeeeeee! he is definitely growing. he's now up to 23.5 pounds and 31 inches. this may not mean much to anyone else, but it means a lot to me. e is now in the 35th percentile for weight and 46th percentile for height. this is HUGE considering he had been in the 10th and 14th percentiles (respectively) at his last visit. and before that, he was in

sarasarasarahttp://www.blogger.com/profile/01522988547372855597noreply@blogger.com1tag:blogger.com,1999:blog-1135117924306469883.post-186023328340892852008-09-24T21:39:00.004-04:002008-09-24T21:50:24.153-04:00you know, sometimes people are assholes.

why would i say this? it's simple...i am a truthful person, thats why. this past monday i had to take evan to the er (again!) for yet another head injury (in the same spot as it was the monday before). anyway, when i was getting evan into his "room" at st. joes some arbitrary nurse comes in to ask what happened. i give her the run through of how he was scooting a plastic pitcher across the

sarasarasarahttp://www.blogger.com/profile/01522988547372855597noreply@blogger.com1tag:blogger.com,1999:blog-1135117924306469883.post-54970504613962949672008-09-20T13:32:00.005-04:002008-09-20T14:24:30.363-04:00farewell, foreskin.

in an effort to get caught up on evan's past 14 months, i'll start with our first hemophilia hump. the circumcision. we knew we wanted to have him cirumcised, but since he was diagnosed with hemophilia my ob declined to do the procedure. so, off to the pediatric urologist we went. e's circumcision came right around the time he was 7 weeks old. the wounds were still fresh from his diagnosis,

sarasarasarahttp://www.blogger.com/profile/01522988547372855597noreply@blogger.com0tag:blogger.com,1999:blog-1135117924306469883.post-72989080061804296162008-09-19T20:39:00.009-04:002008-09-25T14:35:13.681-04:00so this is my first post.

well, this is quite a step for me. my very first post on my very own blog. it's sort of strange to me...sharing my thoughts and feelings about something so personal for anyone to read. not that there is much that i keep to myself, but it's the voyeristic part that sort of weirds me out. i guess it's just the venture in to uncharted territory that has me scared and excitied and nervous all at

sarasarasarahttp://www.blogger.com/profile/01522988547372855597noreply@blogger.com2